Your Role In Alzheimer's Care

As the caregiver for a loved one with Alzheimer’s disease, you will have to perform many different tasks and roles as the illness progresses.

Throughout your loved one’s battle with Alzheimer’s disease, your most basic care goal will be to ensure his or her physical comfort and safety while preserving a sense of emotional calm and self-esteem. You will have to control where your loved one goes and the things he or she does, becoming his or her nurse and advocate. Your will also need to closely observe your loved one’s behavior, and work with his or her health care team to develop solutions to any problems that occur.

Care At Different Stages Of The Illness

Alzheimer’s disease is characterized by the slow deterioration of mental processes, and its progression will cause marked changes in your loved one’s abilities and behavior. Because of this, each stage of Alzheimer’s entails its own special care problems.

Early Stage

In the early stages, your loved one’s foremost difficulty might be forgetfulness and impaired learning ability. Your role might be to help find ways to maintain your loved one’s ability to act on his or her own as much as possible. The early stage of Alzheimer’s is also the time to put a good health care team in place and to plan for the future. Talk with a lawyer concerning a financial plan for yourself and your loved one.

Middle Stage

Safety is a big concern during the middle stage of Alzheimer’s disease. Your loved one’s memory is failing and judgment is poor. He or she may wander or get into things around the home that pose a danger. You may have to watch carefully to see that your loved one doesn’t harm anyone. During this stage, the job of caregiving may expand beyond the abilities of one person. You may need to set up a network of care arrangements to support your efforts.

Final Stage

In the final stages of Alzheimer’s, your loved one will become less able to carry out activities of daily living—such as bathing and dressing—and he or she may require round-the-clock nursing care. Although it’s a difficult step to take, the final stage of Alzheimer’s may be the time to consider placing your loved one in a nursing home.

If you’re thinking about moving your loved one to a long-term care facility, talk to people you trust and who know what you’re going through: family, friends, a social worker, a clergyperson, or your doctor. Whether or not you choose to place your loved one in a health care facility, talking with these people can provide information and support.

The Caregiver As Learner

You will be better able to cope with your loved one’s condition if you know what an impaired person can and cannot be expected to do. Keep in mind that much of your loved one’s behavior is the result of damage to the brain and is beyond his or her direct control.

Consequently, your loved one may react in ways that you feel wrong, troublesome, or painful. Your loved one may become so confused by events—or so frustrated by not being able to put concepts together—that he or she will lash out with angry words or physical actions. You will need to learn how to respond calmly to your loved one’s confusion.

Learning to accept your loved one’s confusion and respond with kindness may be easier than learning to control his or her actions. A person with Alzheimer’s doesn’t learn well, so you may not be able to teach your loved one how to act when he or she becomes confused or upset.

You will have to learn tricks of the trade as you try to find ways to prolong your loved one’s ability to act on his or her own. For instance, developing a set routine may help your loved one retain the ability carry out daily activities. Praise and rewards for positive actions may also help reinforce positive patterns of behavior. Different stages of the disease call for different approaches.

  • Signs and picture cues may work for some time.
  • Simple spoken commands may also work.
  • Breaking actions into small, step-by-step units may also be useful.

The Caregiver As Observer

One of the most important things you can do is to carefully observe your loved one. In effect, you become an expert on him or her; skilled at predicting:

  • What he or she might do in certain situations
  • Knowing what will calm him or her
  • What will make him or her happy, or keep him or her busy

Your observations will also play a major part in your loved one’s health care. Your doctor will rely on you for information about the state of your loved one’s mental and physical health. As observer, you’ll need to be objective, detailed, and nonjudgmental. You are called upon to see and report any changes in symptoms or actions. Close observation can also protect your loved one’s safety. Note carefully your loved one’s declining abilities, and remove hazards and restrict or supervise activities as needed.

You will also need to become a good observer of yourself. Try to envision yourself as your loved one sees you to ensure that your actions won’t be upsetting or confusing. You don’t want to trigger troubling or hard-to-handle behavior. You must also watch your reactions to fatigue and emotional stress so that you can protect your own well-being—both for your own sake and for the sake of the person who is depending so heavily on you.

The Caregiver As Manager

Caregiving management skills include relating well, coordinating and supervising caregiving activities, delegating tasks when appropriate, and planning for the future. A good manager draws on all of these skills in order to:

  • Act as the major link between your loved one and family and friends. As such, you will need to keep family and friends informed of your loved one’s condition and what help might be needed.
  • Manage the medical care that your loved one receives. As care manager, you find the appropriate help and work with health care professionals to carry out treatment or care plans.
  • Manage legal affairs and finances for the your loved one with the help of skilled advisers. Current affairs need to be managed, and long-term financial plans must be made to meet future care needs.
  • Organize and direct a network of helpers. Perhaps you will simply coordinate family help at first, but later you may need to find and oversee other kinds of help, either at home or in separate care facilities.

Clearly, a good care manager is the key person in the life of an impaired loved one.

© Copyright FamilyCare America, Inc. All Rights Reserved.

Adapted from Special Care Problems: Aggressive and Violent Behavior, by Kenneth Hepburn, PhD. Department of Veterans Affairs Medical Center, Minneapolis, Minn.

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